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Susan Dominus Delves into the Lives and Minds of a Remarkable Pair of Conjoined Twins

Susan Dominus
Susan Dominus Courtesy of Susan Dominus

New York Times Magazine staff writer Susan Dominus spent five days with the family of Tatiana and Krista Hogan, 4-year-old twins who are joined at the head. Observing Tatiana and Krista as they played, fought, ate, and slept, Dominus emerged with a gripping portrait of the girls’ everyday lives, revealing both their astonishing connection and their ordinary, impish preschooler selves. “Could Conjoined Twins Share a Mind?” appeared in The New York Times Magazine on May 29, 2011.

Here, Dominus tells TON co-founder Siri Carpenter the story behind the story. (This interview has been edited for length and clarity.)

 

How did you get the idea for this story?

One of the editors at the magazine saw this excellent story that ran in the Canadian magazine Maclean’s. Their reporter has been following the twins for several years. Because the girls are starting to be old enough that one can gain insight into their thought processes, this story [in Maclean’s] got quite a bit of attention. While we thought that reporter did a great job, we also thought there was much more to say.

Were there specific angles that you were interested in pursuing that weren’t in the Maclean’s piece?

I think the reporter, Ken MacQueen, captured beautifully the personality of the family and he also shared some of the details about the uniqueness of the girls’ brains. We thought a longer story would have the space to explore more nuanced family dynamics and say more about the neuroscience about how such a connection would work, as well as what philosophers might make of that connection.

How did you begin your reporting?

I read everything I could about the family and about other conjoined twins. And I watched a documentary that the National Geographic Channel had run about the family when the girls were a little bit younger, as well as some documentaries about other conjoined twins that had run in various places. As I was traveling there—literally I was at the airport—a friend of mine suggested I talk to our mutual friend, Peter Freed, who is a psychiatrist and a neuroimager at Columbia. He’s very interested in the emerging field of the construction of the self in neuroscience. I called him from the airport, and he sent me links to five different journal articles to read, all of which were quite dense. But that sent me down a path that turned out to be very interesting.

So when you were heading out there you didn’t necessarily know about some of the scientific questions that you would be tackling in the story.

No, it was very much happening as I was reporting it. I would call Peter at the end of the day and say, “And then I saw this…What could explain this?…What do you make of that?” And he would say, “Go read this,” and, “That’s very intriguing because of that.” He helped me figure out where I was going. Then when I got back I read several books by prominent neuroscientists whose interests overlapped with some of the profound philosophical issues related to the the twins’ condition.

Were there differences of opinion about the significance of what you were observing? Did you have to adopt a point of view?

Oh, that was fascinating. Some scientists I spoke to said, “Sure, of course it makes sense that if they have any overlap of thalamic neural material, then they would share each other’s sensations—what could be more obvious than that?” Others were absolutely floored by these details. So I would speak to one neuroscientist and say, “Well, Neuroscientist X told me he thinks what’s happening here is this,” and the second neuroscientist I was speaking to would invariably say, “What did he think? That’s ridiculous!” Then he would have his own theory. I would take then take that notion to a third neuroscientist, who would say, “What? That’s absurd!” It was really fascinating because they’re clearly in such uncharted territory, and it seems to trigger very intense emotions.

You seem to have made that mystery and disagreement a theme of the story, rather than a reporting obstacle to be overcome.

I’m glad you felt that way. I often say that whenever you’re writing a story about science, and particularly about the brain, there comes a point where you have to write a paragraph that says, “Of course, scientists don’t really understand how fill-in-the-blank really works.” I tried to hover above kind of a hard landing and just point out the wonder of the circumstances of the girls.

Tell me about the five days you spent with the Hogan family. Were you staying at their house?

I spent one night there, and then I was with them most of the time over the subsequent four days. There was one day that was spent traveling to Vancouver for the girls’ appointments with their doctors. It was very lucky for me that they were taking that trip to Vancouver while I was there, because I was able to both see them in their home environment, meet with their doctors, and even be present for some of those appointments. I cleared that through PR very thoroughly beforehand, so no doctors were surprised to find me there.

When you were at their house, were you a fly on the wall, or did you conduct formal interviews?

Both. I definitely sat down with the girls’ grandmother, and Felicia [Simms], their mother, with my little iPhone recording app, Voice Memos, going for a solid hour or so here and there. I did a lot of just observing, and I also spent a lot of time playing with the girls because they’re adorable and fun. Basically I was another guest in the house. Sometimes I played with them, and sometimes they got bored with me and wandered off, and then another one of the kids would come over and chat with me, and I’d get some insight into how the family interacted.

Did you have particular questions in mind as you were reporting?

I definitely had a question: Can the girls share senses? I don’t think that it ever occurred to me to ask something like, “If the thermometer goes on the tongue of one girl, would the other feel it?” But certainly when one girl curled her tongue, even though the thermometer was in her sister’s mouth, you couldn’t help but notice that and wonder what to make of it. I felt constant amazement, even though I had to go in there as a skeptic. I went in there fully prepared for the possibility that the family was overstating some of what they were seeing, but clearly, that was not the case.

What aspects of the reporting were the most difficult?

I struggled with whether there was something inherently off about deliberately doing little “tests” [of the girls’ perceptions]—for example, the photographer and I asked someone in the family to put their hands over one girl’s eyes while we held up the doll in front of the other. I wasn’t concerned that we were presenting “tests” like this as more authoritative than they were, and we didn’t pretend they were authoritative, but it did feel slightly invasive to me. I think I would have felt more uncomfortable about it except that I think the family does it for fun all the time anyway.

What challenges did you run into in the writing process?

I remember I had a false start with the opener. As soon as I was with the girls at bedtime and I saw them fall asleep, sort of moving in simultaneous mirror movements and then suddenly drifting into their own individual movements, I knew I had my ending. But I didn’t immediately recognize that the same scene was the opener. I think I might have started with the girls fighting, and eventually revealing that they could not get away from each other the way ordinary twins can. But I also wanted to show, as the reader meets the girls, how much their family life is like that of any other family–the bedtime battle, the grandmother familiar with the routine, the sweetness of it all. Another challenge involved writing about consciousness and the construction of the self and split-brain syndrome—that was all really new material to me. Sometimes I would change half of a phrase and wanted to make sure that it doesn’t somehow change the entire paragraph so that it no longer makes sense. I think there’s a level of comfort that you have to get to that entails often emailing the same expert—maybe even somebody who’s not even going to be quoted in the piece—to make sure that you have it just right. You have to be willing to do this to the point of embarrassment, where the email starts, “I’m so sorry to trouble you again…” What came out of that was the hope that once the piece went to press, I would not be awake in the middle of the night dreading the possibility that I had written something a neuroscientist would dismiss as preposterous.

Are there any major ways in which the published story differs from what you originally conceived?

I think I had written less about the dynamics of the family in the original draft, and my editor encouraged me to include more. At the time I thought, “The family is interesting, but this is a story about neuroscience.” But she was right: It was important to make the family as human and real as they are, especially in a story that’s as sensitive as this. In the end I think it was a much better story for actually having some more insight into how this particular family works.

Is there any great material that got left on the cutting room floor?

The best details that couldn’t make into the piece I was lucky enough to be able to blog about on the New York Times Magazine blog The Sixth Floor. For example, my friend Peter Freed gave me a beautiful little riff about the history of neuroscience and how it’s progressed, and I blogged about that. There were also some theories about what could be going on at a physiological level to allow the girls to be sharing experiences, which I hadn’t had room for, and I wrote about those on the blog as well.

How long did it take you to write the piece?

I would say just over a week. But I had already written notes that I ended up using in the evenings when I was doing the actual reporting months earlier. I often find that writing comes much more easily when I am not on deadline and when the material is fresh in my mind. So sometimes, at the end of the day, I just let myself go and write about what I have seen that day, not worrying about structure or whether it is thematically relevant—I just write about what I saw that is most striking or what moved me the most. Sometimes that material makes it in to the piece, sometimes it does not; but when I do finally sit down to write, once all of the reporting and research is done, I am usually thrilled to have that material, and am happy to start working into the piece whatever is there already that first captured some excitement I felt about the subject.

In addition to the question of how the girls’ minds are linked, what themes did you feel were most important to weave into the story?

I was fascinated by the family’s own fascination with twins—that was sort of a theme that goes throughout, this idea of a longing for the perfect double. I was so moved when one of the children talked to me about how he lost a twin in utero, but thought he could still escape into his twin’s body when he was feeling angry.

Another relevant theme came out only after my editor asked me to go back and do some more reporting. “You know, I really don’t think I have a handle on how the mom, Felicia, feels about the girls,” she told me. This was maybe the Monday of the week this piece is going to go to press on Friday. I thought, “Well, you know, I interviewed her, and I think that everything there is, I have….” And she said, “Yeah I think that you need a little more.” I was like, “Do I need to call her tonight and interview her again? Really, I’m going to ask her one more time, the same questions?” But it was one of those amazing things where you feel like you’ve learned everything there is to learn, but you make the extra phone call, and you are so glad you did.

It was in this conversation that either I heard for the first time or I grasped for the first time that to Felicia, their mother, the twins were just part of the family’s overall uniqueness. They had sort of an alternative vibe; they always thought of themselves as unconventional, and in fact they are people who are happy to fly their freak flag. So they think that they are in some ways superbly prepared for conjoined twins—much more than a Leave It to Beaver family with the perfect manicured lawn. That was a pretty profound insight, for me, and I was happy to include it in the piece. It was one of those times when that editor says, “Can you make one more phone call?” and you’re like, “Gaaaaah!” But it’s always worth one more phone call.

 

Siri Carpenter Becky Appleby-Sparrow

Siri Carpenter is co-founder and editor-in-chief of The Open Notebook. Follow her on Twitter @SiriCarpenter.

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